Wednesday, May 1, 2013

On having a heart

It seems that the squeaky wheel does, eventually, get the grease. Finally, I know why my radiotherapy has been delayed, but it took me a while to break through the wall of front-desk heartlessness and get to someone who cared enough to explain.

It only took four long and exasperated phone calls, most of which ended in me bursting into tears. I was reminded of what Simone said to me while I was in the Base Hospital; the quickest way to get to see a social worker is to cry. Five minutes after I hung up from the first call, I had Mel the radiotherapy social worker calling me, and she kept in touch over those next few days while I was in No Man's Land. I suspect it was she who knew which buttons to push to put the pressure on Professor Power Ranger for a response.

She's got a heart.


Yes, thanks mostly to Mel and the second, somewhat more decent-hearted receptionist I spoke to, I finally got a call from the man himself.

He also appears to have an adequate supply of compassion along with the knowledge. And after talking to him for fifteen minutes, I'm wondering why the hell he didn't do the calling in the first place- because now I get it, and now I don't feel anxious, and now I'm quite happy for the radiotherapy to happen whenever they're sure they've got the plan right.

Yes, yes, I know what you're going to say. But that's what receptionists are for, yadder yadder, and his time is better spent doing the expert medical stuff, not making phone calls, blah blah.

Is it really? That sounds like a paradigm designed by a time-and-motion expert, not by a human being. These people are dealing with patients who are desperately trying to keep their balance while standing on one foot on the fulcrum of the life-and-death see saw. If you're going to heal anxious, terrified people during the biggest crisis they've ever experienced, you need to have a big heart as well as a firm grasp of the relevant medical specialty.

Plain old efficiency won't do. People need reasons. People need compassion. People need reassurance.

What I needed to hear last Friday, when I got the first call, was why my treatment was delayed- because I was sending myself round the twist wondering if something was wrong, regardless of the reassurances of the second receptionist I'd spoken to. And once I got through the secretarial brick wall to Prof PR himself, I got exactly that- clearly, and with zero fuss.

This is what I heard.


I have a weird heart.

(That's not how he put it. But that's the essence of it.)

Because of my heart's particular shape and location, they can't just zap my left chest wall in the usual fashion. They have bring the beams in from a different direction, calculate the correct angles to miss my heart but still nuke the target areas, and check the overlaps of the beams so that the whole area gets the same dose of radiation. The aim (apart from not killing me by accidentally frying my heart) is to ensure that the area of my chest behind where my breast used to be doesn't get partly overcooked and partly underdone (which of course would allow any parboiled Freeloader fragments to regenerate).

On hearing this later, Mel had an explanation too.

"It's because you have a big heart," she suggested.


And she doesn't even know me, really. We've talked on the phone maybe three times, that's all. I guess she heard me loud and clear when I was telling her about the Bear and his history. That's the bit that cracks me up, every time. I can deal with my own stuff, but I can't deal with the look in his eyes when he talks about radiotherapy.


I got the chance to ask Prof PR a few questions, too. He didn't just garble an explanation and hang up.

(Good for him.)

First I asked him about zapping my neck.

"Will it get my thyroid, and what effect does that have if so?"

"Good question," he replied. "It'll hit about half of your thyroid. Mostly that doesn't cause a problem, but occasionally people report symptoms consistent with thyroid failure if the other side doesn't compensate. We'll keep an eye on that through your treatment. Make sure you report any excessive tiredness, for example."

Oh lovely; another thing to watch out for.

"So will kelp tablets help my thyroid?"

I almost heard him shrug.

"Well they certainly won't hurt."

Okay, tick off another of Jimmy's remedies; good.

Off on another tack now.

"Can you actually see the lymph nodes on the CT scan, so you know what you're aiming for?"

"We can't see the actual nodes, but we can identify the tissue that contains them and target that area."

Hmm. Okay, so we're aiming at an area there too, not at dots.

"What causes the tiredness during radiotherapy, apart from a failed thyroid? Everyone says it's the worst side effect."

I was starting to sound like I was reading from a list, but that's what happens when you obsess about something; you get questions going round and round in your head till you have someone to ask who might actually answer.

"That's a funny thing. Nobody knows. You get that same effect whether we radiate your thyroid or your foot, and nobody has ever been able to discover why."


And finally, the $64,000 question.

"So when do I start treatment?"

"Well, in my opinion the plan we've got now is good and we should stick with it, but it still has to be ticked off by a few more people. If all goes well I'd expect you to start on Tuesday or Wednesday next week, but you'll have to wait for a call to confirm that."

I'd run out of questions. I thanked him for his time, because I know he would have torn himself away from some other patient's crisis to speak to me. He sounded pleased by that. I wonder how many people remember to thank him for having a heart?


So cross your fingers, everyone. With luck I'll only be a week behind schedule.

And all the delay's been because of my big heart. No question that I've got one too, jokesters; they've seen it.

But I reckon they ought to scan that first receptionist ASAP.

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